Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

[xrayspex]

sorry to hear that liquid sky

 

[Christopher]

Considering you've researched the protocol and COX2, may I ask why YOU have yet to try it?

If it works, it would achieve remission and I'm sure you'd be thrilled with that result.

calm down dude.

 

[Jon_Tradicionali]

calm down dude.

?

 

[lartista]

Pulsing Valtrex can result in you developing an antiviral resistant form. Not a good idea for you or anyone exposed to you.

I have never heard of pulsing VALTREX...

 

[lartista]

This is very interesting to me as I have terrible vision problems since getting ME. I'd never heard of Uthoff either, this would contra -indicate infra red saunas which I've been advised to do by several doctors.
Please keep us informed about how you get on with Dr Klimas - we can all learn from what the top docs are doing, (even if we can't access it here in the UK) I never knew a virus could get into the eyeball - damn them.

My eyes have been a nightmare... It first started in 2011 and she found something on an eyetest not closing the circle... can't explain more... then the vision kept going. Then Nov 2012 I suffered a migraine and my eye was fading up till that point. I was admitted for one week and they found nothing. Jan 2013 they found RETOBULBAR OPTIC NEURITIS, a central scotoma, severe vision loss, some color loss but most but not all returned, and herpes scars on my cornea though I NEVER HAD HERPES show up.

My titers for HHV-3 Varicella was off the list meaning I had shingles without a visual breakout... all said and done the diagnosis was I had suffered another stroke in that eye while my heart was waiting for ablation. Shingles got in and did damage. I was followed in two countries fit MS but both countries after these two years say no MS. And when I get my notes from Klimas... she wants an EYE BALL BIOSPY!!!!!!!!!!!!!!!!!!!!! YIKES!!!!!!!!!!!!! If I undrestand her...she thinks maybe a virus got in my eye or optic nerve... CRAZYYYY...

 

[maryb]

@lartista
what you've gone through sounds like a nightmare, so sorry.
I suppose a/virals are the only treatment then?

 

[heapsreal]

My eyes have been a nightmare... It first started in 2011 and she found something on an eyetest not closing the circle... can't explain more... then the vision kept going. Then Nov 2012 I suffered a migraine and my eye was fading up till that point. I was admitted for one week and they found nothing. Jan 2013 they found RETOBULBAR OPTIC NEURITIS, a central scotoma, severe vision loss, some color loss but most but not all returned, and herpes scars on my cornea though I NEVER HAD HERPES show up. My titers for HHV-3 Varicella was off the list meaning I had shingles without a visual breakout... all said and done the diagnosis was I had suffered another stroke in that eye while my heart was waiting for ablation. Shingles got in and did damage. I was followed in two countries fit MS but both countries after these two years say no MS. And when I get my notes from Klimas... she wants an EYE BALL BIOSPY!!!!!!!!!!!!!!!!!!!!! YIKES!!!!!!!!!!!!! If I undrestand her...she thinks maybe a virus got in my eye or optic nerve... CRAZYYYY...

OMG, you have been through the wringer. Hope things settle soon.
I guess any of the herpes viruses can affect the nerves etc, cmv is well know for causing eye issues. Maybe a biopsy is the only way to really tell what is going on. Does sound scary, i dont know anything about it but maybe it sounds worse then it really is?? I hope so.

 

[heapsreal]

i dont know if it would help or not but they do make an acyclovir antiviral ointment for the eyes??

 

[lartista]

@lartista
what you've gone through sounds like a nightmare, so sorry.
I suppose a/virals are the only treatment then?

I was on Valtrex which worked but since the CVID diagnosis, Klimas is changing my strategy. Before it was VALTREX 2 GRAMS, LDN 4.5 MG, Pulsing IMUNOVIR... which all worked damn well... but then I was off a year and now we are doing LDN 4.5 mg, Pulsing Imunovir, Fludrocortisone, and we are waiting for IV IGG ...

 

[m1she11e]

Oh my, I haven't been on here for awhile but wanted to see the latest on the Pridgen trial. The bickering is stressful as always..

I am hoping some sort of protocol with dosing comes up soon. I know that this subject has been touched on before but Montoya no longer uses Valcyte for any of the Herpes virus' as far as I know. I have had good success with Acyclovir in a very high dose. I have not tried Valtrex. Famvir doesn't work as well as Acyclovir for me and great for others. My point is, figuring out the whole dosing and which anti viral will be difficult. It seems we seem to get different responses from different anti virals when some of us are fighting the exact same virus'. I understand that this study is for HSV but I assume he is getting results with the whole family of Herpes virus'. The success is probably the right anti viral for that particular individual combined with a Cox 2 inhibitor. That would be a difficult one size fits all I would think.

I personally plan to stick with Acylovir (since it works for me) and add whatever Cox 2 inhibitor he is using at the dose he is using. Really interested to find out what that will be.

Whether we have ME or Fibro is less important to me than whether I have been diagnosed with the Herpes virus' (as I have) If we have these virus' this could possibly bring us another level of health.

More information, less arguing about the small stuff!!

 

[globalpilot]

I'm glad the acyclovir is helping you. I'm wondering how long it took to see improvements.

 

[m1she11e]

I think I posted a lot in an anti viral thread. The dosing and all is there. I have backed down to half now and that holds me. I don't feel bad taking it on going like I would the scary anti virals. I am also careful because even amino acids with the wrong balance of Arginine to Lysine will throw me off. I know that my viral issues are a huge component.

I am not cured but I am doing very well considering. I have trigeminal nerve issues that my doc and I believe are related to HSV in that nerve. I guess it loves that nerve. That has never gone away with the anti viral so I am hoping this Cox 2 think jumps my treatment up a notch and gets that virus under control. I got some filler (facial stuf involving getting stuck with needles and swelling) and after the side of my face affected with virally induces neuritis went CRAZY. That is how the HSV virus acts when I do skin peels on my clients or present any trauma to an area that has been affected by the virus. Anyone with a history of cold sores has to up their anti virals when having invasive stuff done to their face. So, I have a pretty clear indicator of when that virus is out of control in my body. I am told that the whole family of Herpes virus' like to hang out together. (Like most families)
So where there is one, there is probably the HHV6 and CMV I am fighting as well.

I am able to work out daily and I work out hard. I do not suffer the next day from it. It was the combination of Acyclovir and Progesterone (happened to be one of my issues) that got me to the level of working out I am able to do. I also think the product Protandim has helped me greatly as well. Those are the three things you could not get away from me. My resting heart rate was around 110-120 (doc thinks due to my constant fight with the virus as my heart and blood pressure are great) and now it is in the 80's. It has never dropped below 100 since I got sick 30 years ago.

Ive been bedbound in the past so there is hope!

 

[m1she11e]

Oops, didn't answer question about how long improvement started... I took several anti virals and they may have all had an impact on the virus. It was taking the Acyclovir at the high dose for at least 8 months that I realized I could work out and I think that started the upward spiral. It is strange how I have improved. Its been slow realizations. I still feel so crappy but I can look back and say that I have not spent a day in bed for about a year. (Besides a flu) I take naps maybe 4 times a month now. I used to spend at least 7 days a month in bed for most of the day. I napped every chance I got. That was my norm. I had a year of bed/house bound once that trumped all.

So my answer is it took at least 8 months but I saw small bits of improvement along the way. Still very very tired with all kinds of weird symptoms. They are just way more tolerable. Like I said. I can push through now.

 

[maryb]

@m1she11e
can you remember in which thread you posted what the acyclovir dose was?

I agree about the facial issues, a little bit of cold wind on my face is enough to trigger a Bell's Palsy type episode.

 

[m1she11e]

Maryb, I am about to walk out the door. I am not sure about the thread post right now. I don't want to hijack this thread so if you cant find it message me and I will message you back the dosages etc.

Interesting about the Bell's Palsy episodes. I have not heard of anyone else on here dealing with that. It actually affects my ability to move my right eye and speak at times. Very scary!!!

 

[lartista]

The latest I read is that Pridgen found two different cocktail mixes that work (like I said one better and then a 2nd back up one) and they will be available in THREE YEARS he just said again.... or you could try what I wrote about above before too many "not know it alls" started saying WAIT.... for any of you interested I started a facebook group here at this link... https://www.facebook.com/groups/mecfssafeexercise/

 

[maryb]

@lartista
is this facebook group to discuss Pridgen's work?

 

[lartista]

No... I am finally getting on Klimas' protocol to work out.. and I could not find a ME/CFS workout partner. I started the group yesterday and 180 people joined and they are buzzing around with what they have learned to do do cope with sneaking in safe exercising... I AM SO IMPRESSED with them... my heart ejection fraction dropped 5 points in 5 years and then another 5 points in ONE YEAR.... so even with ME/CFS and POTS, I was advised to do something... It is a great POSITIVE group of people.... join if you think it will help you.

 

[globalpilot]

@m1she11e
can you remember in which thread you posted what the acyclovir dose was?

I agree about the facial issues, a little bit of cold wind on my face is enough to trigger a Bell's Palsy type episode.

I found the dose in the acyclovir thread. It is 800mg 4pills/day, 2 at a time.

 

[maryb]

@globalpilot
thanks

that's a high dose?
think a few doctors been having patients start lower.